Month: October 2015

Hi Dale, here. I haven’t posted anything on the blog for a while. I have no excuse, just good old fashioned laziness. I don’t think that’s a symptom of Asperger’s, just a symptom of being a man!

I recall that I wrote an open letter to Aspies quite some time ago, and felt the need today to write a form of open letter to NTs (neuro-typicals… a term for all those without an Autistic-Spectrum Disorder). Specificaly I wanted to write about helping those on the spectrum, and things that DON’T help.

Before I go any further I want to make the disclaimer that I am not in any way professionally qualified to deal with the subject, this is simply a letter from someone with personal experience on the matter, but with limited input from others on the spectrum. I’ve researched ASD conditions somewhat, but not sufficiently to be authoritative on the subject.

The first point to make I feel is on encouragement. A little encouragement can go a long way, as can setting achievable milestones, but it can be too much. When pressed too strongly to do something I simply feel incapable of doing as for yet, the result is negative, and can mean that the effort and progress I make can be reverted when I go back to a safer rung on the ladder of life so as not to upset the balance.

If you give the right level of encouragement, you can see an Aspie make changes for the better at their own pace. But if you try and strongarm them into doing something they feel is impossible or simply too uncomfortable you can risk at best making them avoid situations entirely, and at worst, causing a meltdown. In my case, it’s usually avoidance – meltdowns are rare for me – but the experience of other Aspies is entirely dependant on their own make-up.

The second point to make is language. Both verbal/written and body. It’s a well known fact that Aspies can struggle with ambiguous language, body language, tone of voice, facial expressions and verbal cues. When an Aspie interrupts a conversation, it’s not meant to be rude (usually) but you can say “give me a minute” or likewise, to let them know you have been alerted to their presence and will address them. You don’t have to drop the previous conversation to allow us to speak, that doesn’t help to practice verbal cues, but don’t be angry, irritated or defensive. Most of the time, a misunderstanding of verbal cues is simply unintentional.

A common misconception is that Aspies are unemotive, or lack empathy. While this can be true perhaps of a small subset of those on the spectrum, the idea is more often false. In some cases we can be extremely empathic – more so than many NTs – but when you factor in difficulties with reading emotion in faces, voice and body language, we can read the wrong emotion to be empathic about, and that can lead to anxiety, depression and loneliness, all of which can exist and can be common, among those on the spectrum.

I think a final point to make is on specialist subjects. I for one have a number of topics I can be passionate about, but then lack interest in discussing someone else’s specialist subject. I know this is rude, and it can help myself and I think others on the spectrum to not only listen to my own subjects, but encourage interest in the lives and details of those around us, so as not to be rude and to improve relationships.

I think that’s all I want to say for now. Hope this helps both NTs and Aspies alike!

So, it’s 11:38pm right now and even though I wasn’t about to go to sleep anyway, I’m trying to stay accessible to Dale by staying online on Facebook just for a little while. Why? He can’t sleep. He’s part-exchanging his two guitars and a keyboard to be able to buy a new guitar for himself, however, he seems to be anxious about getting the quoted e-mail for his instruments and on making the right decision on the guitar he’s buying. It’s unusual for Dale to be still awake at this hour when he needs to be up early the next morning and it’s also the first time I’ve received a message from him when he can’t sleep.

I’m glad he seems to be more comfortable in telling me when he’s a bit anxious about something, even when it’s late at night. It’s hard to think of a time that he wouldn’t tell me about things he was anxious about because he was also anxious that I would see him as silly.

It’s been fifteen minutes since we said said Goodnight for the second time, so I’m assuming he has finally found some peace and is hopefully in the land of nod. I’m going to give it another ten minutes before I turn off Facebook and attempt to find the same sleep. I’d rather be 100% sure he’s found sleep before I find it. He was pretty exhausted when I left him earlier (we met for some Pizza and Netflix) and we even fell asleep on the sofa for thirty minutes before I left, so I know he needs sleep.

Twenty-one Minutes gone and no news. And in this case, No News is Good News.

Spending so much time away from home [and Dale] makes me think about all the little things I miss about Dale and being with him.

Everyone will say that it’s natural that things that you’re partner does subconsciously will annoy you. What they don’t always tell you is that they’re also some of the things that you will miss the most while you’re away from them. My time away from Dale is difficult; it’s difficult being away from home in general, and there are some things about Dale that I really do miss (most of them don’t annoy me, in fact hardly any do… at the moment).

When Dale and I ‘Netflix and Chill’ we’ll curl up on his leather red sofa, snuggle and quite often snooze. I’ll lie my head on his stomach while he puts his arm around my shoulder (I’m always on his right side as that’s the best side as he can hear better from his right side). It’s my FAVOURITE PLACE to be. Unintentionally I’ll most likely fall asleep because I’m in a comfortable place and position, and he’s just so snuggly. He’ll be rubbing his feet together (much like he rubs his hands together when he has an Anxiety Attack, but apparently he does this when he’s happy… like a dog wagging his tail, which I’m sure if Dale had a tail, he would totally be wagging it 24/7).

We’ll sometimes go around his parent’s…

(there’s a cat outside making those weird cat noises, y’know the ones that they normally make before you hear multiple screams as they claw each other to pieces… sorry, distraction)

… And he’ll tap his feet. I think this is him when he’s ‘Song in my Head Dale’, but I could be totally wrong. Because his parents have wooden flooring, and his parents’ house is very echoey, it can be a lot more resounding then normal. I’m tempted to buy a rug or mat for the place where Dale sits so that the tapping isn’t so – tappy.

I have two favourite sounds when with Dale. My ultimate favourite is quite soppy and gooey. It’s when I lie my head on his chest and I can hear his heartbeat. I didn’t think I could grow so attached to such a simple sound. But Hey Ho, I have done. Gooey Alli likes the sound of her boyfriends Heart. The other sound is Dale snoring. I don’t know why, most people hate the sound of their partner snoring, but I absolutely love it. To be honest, his snoring isn’t full on ‘Daddy Pig’ snoring. It’s quite a peaceful snore, but it’s so soothing and hypnotising. I love it.

When he does fall asleep, I’m normally in his arms, and I do try my hardest to move out of his arms so I can catch a glimpse of him snoring. It never works cause he sleeps lightly so the slightest movement from me wakes him up much to my disappointment. I’ve only ever seen sleepy Dale once, and that’s when we came home from London after his Cochlea Implant operation and he kept falling asleep. And the numpty wanted to go to the pub when we returned! He was pretty exhausted the poor thing.

Another thing that I love is watching him play his instruments. He’s a multi-talented man. He can play Piano, Electric Guitar (really really well), Mandolin (a weird Ukulele type thing) and most probably a few more. He also writes and composes his own music, to which I have the pleasure of having a song written about me. Of course, his music choice is slightly different then mine. I like folky music (like Newton Faulkner or Mumford & Sons) with the occasional Fall Out Boy, however, Dale is more Heavy Metal Screamo Scary music.

Cooking is one of my favourite things to do with him. Because he’s Aspie, he follows instruction to the letter, even if I know we can deviate a bit. If the box or recipe says 45 minutes in the oven, it has to be in there for 45 minutes. When we cooked Chicken Breasts wrapped Bacon, Dale was very watchful on how we cooked it, and after it came out was clearly a little reserved (he doesn’t like the idea of food poisoning one bit… then again, who does?). I did cut open the chicken so he could give it the satisfactory nod. It was very good; better than I expected.

Dale also sometimes goes off on tangents and talks about things that he’s really interested in. He will often ask me if I’m boring him, which I’ll politely reply “nope”, and even though I am listening, I’m just marvelling at his passion for this one thing he’s set his mind to.

And that’s what I love most; the way his brain works. It’s so different to mine, yet so similar. Maybe that’s why when he told me he was Asperger’s I couldn’t see it because we’re so alike. Of course when I looked up ASD on the all-knowing Google, I was able to match up Dale to most of them, but there was still so much of Dale that I could match up to me.

Anxiety doesn’t make a person week but makes them a stronger person then I will ever be.

Dale has Anxiety. I have to say, I dread when Dale messages me saying that he’s not having a good day and last week and this week his anxiety (which he has told me about) has been mainly about our relationship.

It’s been a difficult couple of weeks and the hardest has been the last and this week. Last week I was expressing my feelings to him about my exhaustion over working, university and travelling here, there and everywhere (I work in my home town which is about 50mi away from my Uni City, so every friday I drive back home mainly just for work). I hardly get to see anybody, including my family and I haven’t been to church since I started university because of my job. It’s incredibly frustrating.

And then Sunday I had a very bad day at work. I was supposed to meet Dale after work but because I wasn’t in a great mood, had a headache and also was exhausted, I decided to not meet with him. I just wanted to come home, eat dinner and do absolutely nothing. I had had enough. He had tried messaging me all of Sunday, even offering to call me, but because I just wasn’t in a good mood, I just wanted to finish and go home. I didn’t want to do anything.

Monday, I met with Dale after he came home from work in London. All we did was watched Netflix, and fell asleep in each others arms on the sofa, while watching Netflix (I went home around 10:30… so I didn’t stay late… I was shattered). We hadn’t talked much over text message all day (I was sorting out my car; fixing it and replacing some things and he was a work; he’s just started a new project). He did text me that he had to take a walk because he was having a bad moment, but because I was driving I was driving, I couldn’t talk to him.

When we got to his, he made me a cup of coffee in a new mug which he had bought for me because I had had a bad day Sunday. It was a Harley Quinn mug… I love my boy.

While we were together, Dale voiced an anxiety he had had all day, and it pained me to hear it. His anxiety was telling him that we were growing distant and that we were steadily beginning to grow apart. When in fact, I feel the complete opposite. We know each pretty damn well and I think the distance is only showing us how much we desperately miss each other when apart. And I do. I miss cuddling him, telling him that I love him in person, hearing his laugh etc. It feels like 1000 years between seeing each other and then a couple of seconds spending time with each other.

But I also had a breakthrough Monday. I stared Dale and Anxiety in the face and told Anxiety to take a hike. Because I had fallen asleep on Dales shoulder and was still fairly tired when I had to go home, Dale was worried that I wouldn’t be okay driving. Last time he was making scenarios up in his head in which I fell asleep at the wheel (something I haven’t done), in which when I text him to let him know I was home (something I always do), Dale told me he was worried.

Well, Monday, I told him to promise me he wouldn’t get worried. Of course, he didn’t because he takes his promises very seriously, but I did tell him (not ask) to not let his anxiety get him this time. Quite surprisingly it worked. I got home, messaged him I was home, and I received a reply that he wasn’t worried that time. I doubt I can do that with other anxieties, but it worked in that instance and I’m grateful.

Quite a common and misunderstood subject surrounding autism is the issue of physical contact.

Most autistic people cannot bare to be touched and recent pioneering research into why may explain. I did a bit of research, because I didn’t understand all of it and even now, still don’t. I’ve written a summary of research from Dr. Anis from a U.S Northwestern University which explains the fundamentals of Autism and also why Autism is more common in boys then girls.

Quick Biology: The deciding factor of whether a child is a Boy or a Girl is dependant on what X and Y chromosomes they receive from they’re mother. If the child has two X Chromosomes, it’s a girl. If the child has both an X Chromosome and a Y Chromosome, it’s a boy.
Autism is the result of the genetic mutation of the Female X Chromosome. As girls have two X Chromosomes, if one is mutated, the other can make up for the mutated gene (practically replace it) and the person can live a life only being a carrier of Autism. Of course, Autism can still affect girls, so it’s not always guaranteed that the mutated X gene is masked. It could even be that both are mutated. Boys on the other hand only have one X Chromosome. If it is mutated, there is no other X Chromosome to replace it, and therefore the boy will be affected by the mutation.
This mutation causes the sensory synapses in the brain to have delayed development which results in the ‘rewire’ of how they work, meaning they don’t work the same as they would if they had developed without the mutation.
(Source http://www.dailymail.co.uk/health/article-1250461?Why-autistic-people-avoid-hugs-loved-ones.html)

I hope the above makes sense to you.

Too many people misunderstand the withdrawal from physical contact as rudeness and bad behaviour, when in fact it is because the person cannot bare to be touched.

As I have mentioned in a previous post before, Dale has told me about Asperger’s and Physical Contact. At first, I was worried that I had overstepped a boundary that Dale didn’t have a choice on, it’s part of his genetics. However, he reassured me I’m a ‘Safe Person’ (someone who he can cope with touching). Meaning, I can enjoy my favourite hobby; cuddles with my boy.

This is going to sound fairly creepy, but when I watch Dale with other people, especially my younger brother who is quite ‘huge’, Dale does slightly withdraw when my brother hugs him. Sometimes, Dale will even ask my brother to ‘get off’, which because my brother doesn’t understand (and also tends not to listen when people ask him to get off when he’s hugging), thinks Dale is joking until I have to subtly try and hint for him to release Dale.

Putting Dale’s reaction to physical contact is perspective to other spectrum reactions; distressed rocking and even crying out, Dale deals with it quite well.

I am quite curious at to the actual feelings Dale has when being touched by a non-safe person, and do want to enquire, but at the same time, I’m just happy that he’s okay with me cuddling him (and even sleeping on his shoulder). I’m also thankful that Dale is quite open about his Autism and is willing to inform me on all he knows.

(In my last post I unintentionally referred to Autism as a mental illness, which it is not, and thankfully Dale told me before I accidentally offended people. Dale knows me well enough in that way to know that I would never intentionally say something to offend someone).

To be honest, I’m not sure how’d I’d feel if Dale came to me tomorrow and told me I couldn’t hug him or hold his hand. I do try and be careful with my physical contact with him, following his lead and taking the cues from him so I know what he’s comfortable with. There have been a few instances where Dale has told me he likes a certain touch i.e stroking his arm with my fingers or stroking his neck, resting my hand on his knee. In other instances he’s told me when a certain touch isn’t cool with him like tickling (he will either tell me directly or I will notice him shy away and retract).

To be honest I am quite surprised how much ‘touch’ he tolerates. Which is another curiosity for me. Why can he tolerate mine and other ‘safe peoples’ touches but not other? Does even he know why?

Dale is an amazing, intriguing man and I love discovering new things about him. He’s like a maze and I’ve been given free reign.

If you know, meet or come across an autistic person, try not to be judgemental on their reactions to you. I think I am quite lucky with Dale. Most of the time, his heart overrules his brain and that makes him a perfect man; but sometimes, even with Dale, the brain takes precedence and doesn’t allow room for deviation.

Don’t try and change them. Accept them. That’s who they are and how they were made. If they think something needs to change, you can be sure they’ll change it. They’re determined in that way.

This is going to be a very real blog post. It’s very close to the hearts of myself and Dale. We have talked fairly in depth about this, and we’ve both agreed to write about this subject. We don’t know 100% all the details and facts on this subject, so don’t take our word as gospel. We could be 100% wrong on everything.
Please be respectful in any comments you make either to us or to others with this same circumstance.

I’ve always wanted children. I’ve always pictured myself as a mother, taking my children to school, feeding them, looking after them, buying them things and tucking them into bed. I’ve never second guessed me having children, because it’s just part of the way God made me. I am a child at heart, and having children is at the centre of my heart. It’s also what Dale wants. He wants his own children (three daughters to be exact) to be a daddy to.

Don’t mistake, Dale and I are not having or planning children for at least another 4/5 years, and even then we have other things to plan before children even come into the equation.

But there is a big ethical issue looming quite close to our heads. It can be quite controversial (as I have seen over the internet when researching) and it can be quite emotional.Because of Dale being Autistic, it is a theory that his children are more at risk of also being Autistic.

Through my research across the internet, I have read that it is not always the case that an autistic child will definitely be born to an autistic parent/s. There is a chance that the child won’t be, even with a direct heritage, but of course there isn’t any method of predicting; it is Pot-Luck, just that with an ASD Parent, the Pot-Luck is biased.

Dale and I have discussed it together on two separate occasions. I still have no idea how I feel about it. Of course, if I did have autistic children, whether through increased possibility or just random chance, I would still love them and all, but it’s more about how I feel about the whole ethical side of things. Is it ethical to have children knowing that they could have Autism or a Mental Illness? I’m not sure where I stand, and how others would accept my decision. It is a tough one. I’m not afraid of Autism. In fact, through getting to know Dale, I’m quite intrigued and somewhat in awe of it’s capabilities.

I also follow a Facebook Page which follows a Parent of 15 year old Girl with Asperger’s, and apart from the occasional blip in the system, it is a relatively normal life. Go check the page out!

When it comes to me thinking of others accepting my decision, I’m mainly thinking of my family. Of course they would love and cherish any children that I have, whether they are severely ill/disabled or come out with just a cold. But how would they deep down feel that despite knowing the odds and chances that I still decided to have biological children? Moreover, if my prospect child knew/found out that, knowing the risk I still chose to have them, how would they feel about it?

I know at the moment it seems as if I’m writing against the argument, but this is my thought process on the subject. Messy, confusing and very conflicting.

But it all boils down to this…

I could sit here tossing and turning over the difficulties my child would have if they were autistic, and it would be difficult. A difficult thing for me is that [most] autistic people don’t like physical touch. Yes, there are some who don’t mind or have select people who they allow physical contact (Dale is an example). Having someone who I love dearly who couldn’t bare me just hugging them is quite a difficult reality I will have to come to terms with in my own time.

I remember clearly Dale telling me that little bit of information, and me being worried that I’d overstepped the mark a bit with him, then him assuring me I’m one of his safe people.

Of course I’m talking rather selfishly here, about how I would react and do things, but of course, the important thing is, I wouldn’t be on my own. I have my own parents, I would have my husband (which, of course, I would hope is Dale), my husbands parents and also the support from outside the family.

Talking less selfishly and more upbeat, Autistic children can be an absolute delight. They have such a different way of thinking and doing things that it may teach me a few things. For example, I was trying to make a decision over something fairly important, and Dale used the Pro’s and Con’s thing to help make a decision. Me being me, it still took a while, but eventually I did make it.
I used the same technique again today with Dale over trying to decide on going to the pub or having take-away tomorrow; it didn’t work and just confused Dale, but hey… at least I tried. Of course anybody with brains would automatically do this process of Pro’s and Con’s, but I’m doing an Art Course at University. Of course I have no brains! I’m also very rubbish with decision making.

Overall, I want to have children.

My justification is that I want children. I don’t care if they are autistic, down syndrome or any other mental illness. [In the future] I want someone who is part of me who I can love unconditionally and who will love me unconditionally. It is a very real thing which Dale and I will continue to talk about I’m sure for a very long time to come. It’s not something to just jump with to feet in at once, because if we’re not prepared, it’ll be like being hit by a Fighter Jet Airplane. Of course, you learn on the job, but I think we would prefer to be prepared before all of that.